Ileostomy woes

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heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Ileostomy woes

Postby heiders33 » Sat Nov 04, 2017 12:00 pm

Hi all! I am new to this forum. I was diagnosed back in May 2017 with rectal cancer T3a possible N2 M0. I was not completely shocked because I had been having suspicious symptoms for a while, and I had read that study that came out about the rise in colorectal cancer among people in their 20's and 30's. I got through the initial chemo/radiation very well, which reduced the tumor to almost nothing, leaving lots of scar tissue. My LAR surgery in September lasted almost six hours but was successful. All in all, despite some low points along the way, I have managed pretty well with no complications so far. I don't love being on Oxaliplatin (I've had one infusion so far), but I know that it's working so I'm going to push through. I got the first infusion in my arm, but I'm getting a port placed next week because of the vein irritation. The Xeloda barely has any side effects for me.

At any rate, I have a temp ileostomy and it's giving me some woes. The surgeon did a good job with it, and I did have a nurse in the hospital as well as follow-up home healthcare nurses help me with learning how to change the appliance and do skincare. I know that because it's a loop ileostomy it tends to have leakage because of how close it is to the skin. My stoma is a weird oval shape and it keeps shrinking, making it difficult to cut the wafers correctly. I'm constantly having to resize them. I am now almost six weeks post surgery, so I hope that the stoma stays the size that it is and doesn't keep changing. I have started using convex appliances on the recommendation of my nurse, hoping that will help with the leakage and irritation. I also use the Hollister skin barrier rings and paste, and the Cavilon skin protectant wipes, and I just ordered some Marathon Skin Protectant after seeing it recommended on this forum.

It's also extremely active almost all the time! I eat regular meals and don't eat past 7:00 at night. I read on this forum to try peanut butter, marshmallows, and ice water before I change the appliance in order to stop the activity. However, I can't have ice water in the days following Oxi infusion. So I just change it when I can and deal with the mess. My nurse taught me to put a solo cup under the stoma secured by my underwear, which helps.

Additionally, every time I change my appliance (twice per week) my stoma bleeds a lot. I know it's a highly vascular area that gets easily irritated, but I still don't like how it bleeds on and off for several hours after I change. Does anyone else experience this? It doesn't seem good to bleed like that for so long. My nurse told me it's because of cleaning it.

All of these factors make it so that it takes me at least half an hour to change my appliance each time. Not to mention the skin irritation, which is almost all the way around my stoma right now. This is partly because I was just wearing a flat appliance, and I switched to convex. However, I wore a convex once before and there was still some irritation and leakage.

Does anyone have any recommendations, beyond what I am already doing, for skincare? Should I be changing the appliance more frequently? I think I can live with this for the next 3-4 months, but I don't like the feeling of stinging I get several times a day, either from existing skin irritation or stool leakage. Any advice is appreciated!

(By the way, I do have the number of my stoma nurse that I can call. However, I value second and third opinions, and she doesn't answer the phone on the weekends :) ).
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Ileostomy woes

Postby Lee » Sat Nov 04, 2017 2:36 pm

Hi and welcome.

I have a permanent colostomy, butt am aware that the ileostomy can be problems at time. I'm going to recommend checking out this other site.

The United Ostomy Association. They have some very knowledgeable people who can probably better answer your questions.

http://www.ostomy.org/Home.html

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy woes

Postby heiders33 » Sat Nov 04, 2017 3:12 pm

Thank you @Lee! I just posted there.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Ileostomy woes

Postby MissMolly » Sat Nov 04, 2017 3:31 pm

Heiders:
Do visit the UOAA seen site and support forum. I am a regular poster there as a seasoned ostomy veteran. The support forum was a lifeline for me in the early months with my new ileostomy.

The loop ileostomy is a challenging ostomy to pouch. The location of the stoma is situated higher along length of the small intestine than an end ileostomy, meaning that the fecal output has a higher content of digestive enzymes that are irritating to the skin. A loop ileostomy also has a higher volume of liquid consistency output than an end ileostomy - which also makes pouching more challenging.

First, I would recommend that you cease using ostomy paste. Ostomy paste is a misnomer. It has no adhesive qualities. It is not a glue like Elmer’s glue. There is a saying among those of us with permanent ostomies: Paste is a waste. Use of paste can contribute to wafer leaking by providing a medium for fecal material to migrate through.

The only use for ostomy paste is to fill small divots and creases in the skin in order to make a level surface for placement of a wafer. But even that use is questionable. It is far better to use snippets of an adaptic ring to fill divots or creases as adaptic rings do not break down when exposed to fecal output.

Bottom Line: cease and desist with the use of ostomy paste. Ostomy paste is likely contributing to your instances of leaks and resultant skin irritation.

Marathon Skin protectant is fabulous. It is specifically designed to heal skin excoriated by urine and ileostomy output. You should experience skin healing within a single application of Marathon.

For everyday skin protection, almost everyone with a permanent ileostomy uses Cabilon Liquid Skin Protectant (by 3M). Cavilon Liquid Skin Protectant comes as a spray and as individual towelettes. I recommend the spray. Apply a light spritz to clean and dry skin. Then apply your ostomy water. I use Cavilon Liquid Skin Protectant and highly recommend it. I have thin, fragile skin due to long term use of corticosteroids and credit Cavilon for keeping my skin irritation free.

The use of an adaptive ring as you are is the main tool to preventing leaks. Feel free to stretch the ring to better fit your oval stoma shape. You can also feel free to cut the ring and roll it into trin log that you can then wrap around the stoma, giving it additional reinforcement. Adaptic rings serve like gaskets in a faucet. Feel free to stretch and roll and maneuver the ring to best fit the tooography of your abdomen and stoma shape.

Be aware that different brands of ostomy products work better for some people than others. You may want to call and get samples from other manufacturers - Coloplast and Convatech are often favored by those with permanent ileostomies. Everyone’s skin has differences that affect wafer adhesion. Hollister may not be the ideal product line for you.

It is often helpful to warm your wafer and adaptic ring before applying to the skin. Use of a blow dryer briefly before applying can often enhance adhesion. Wafers do not have any glue or adhesive. Wafers bond to the skin through a chemical reaction of the hydrocolloid matrix and the body’s natural temperature. You can also place a warm pack or buckwheat pack on your abdomen after applying th wafer to enhance adhesion. Heat provides the medium that provides the seal of a water to the skin.

There is a steep learning curve to any new ostomy. It sounds as though you are doing quite well this soon post op.
Karen
Last edited by MissMolly on Sat Nov 04, 2017 5:26 pm, edited 1 time in total.
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

User avatar
susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Ileostomy woes

Postby susie0915 » Sat Nov 04, 2017 3:53 pm

I had issues with my stoma bleeding also. Sometimes there would be blood in the bag, but mostly every time I changed it as soon as it hit the air it started to bleed. I had an appointment with the Ostomy nurse to see what we could do. At first they thought I wasn't cutting the whole big enough on the wafer but that didn't seem to be the problem. The night before my appointment I ended up in the hospital with a bowel blockage. The Ostomy nurse did come up to seem me in the hospital. We took off the bag and she stood over me and watched the stoma begin to bleed. She seemed stumped. Well it ended up my surgeon had to do surgery to remove scar tissue as the blockage would not open up after a week. He said if he had to go in he was going to reverse my ileostomy. He did an X-ray with barium to be sure everything was healed. So it became a non issue. I was going to try a different appliance. But never had to has I only had the ileostomy for 4-5 weeks. I was happy about the reversal, but it did cause issues during chemo as I had a lot of diarrhea, and would've been easier with the bag. I hope you can figure out what the problem is, my Ostomy nurse really didn't seem to know what was causing my bleeding. My skin seemed okay, just the bleeding.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

mhf1986
Posts: 63
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Ileostomy woes

Postby mhf1986 » Sat Nov 04, 2017 4:22 pm

Colostomy helper here...

Check the various brands and types. DH is using the Mio Click which is different than what the hospital gave him.

The new Coloplast Brava rings are great, just introduced this year. Better material we've found.

Don't cut the hole too big as it can start to wiggle and rub which will cause bleeding. Change entirety as often as needed, we've found more changing has reduced bleeding.

I did not know that the wafers were not glue...thank you Karen!

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switching to Xeloda too

NHMike
Posts: 550
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy woes

Postby NHMike » Sat Nov 04, 2017 4:39 pm

Thank-you for your post. I just came home with an illeostomy and wasn't aware of any of these issues but I'll keep an eye out for these kinds of problems and take a look at the website. I also have a very active stoma (nurse had to keep cleaning it off with facecloths and towels and it just seemed that it would never stop bubbling out. I also had some blood there and she said that's normal but I didn't notice any blood in the pouch.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Sat Nov 04, 2017 6:57 pm

My ostomy nurse has me prep my system completely against everything they normally tell you to. It was the only way to stop my leaking issues. I cut the hole in my convex wafer much larger than my stoma, she said 2 inches minimum. I use paste to protect my skin in the gap between my stoma and the inside edge of the wafer. I have creases in my belly at the 3 and 9 o'clock positions, so I cut a ring to use at those position, then taper it down to meet the level of the wafer at the ends. Ever since my ostomy nurse set me up like this, I have not had a leak and can wear my pouches for 4-5 days.

The next time you change your pouch, take a good look at it. See if you can find where the leak is occurring. Try to build that spot up with a piece of a ring. The key thing about using paste is to make sure you don't get too much under the wafer. I use a damp paper towel to manipulate the paste into position around my stoma in a circle just large enough to cover the skin that will be exposed inside the wafer.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Ileostomy woes

Postby MissMolly » Sat Nov 04, 2017 8:54 pm

Aqx99:
Your routine is not that dissimilar to standard protocols.

Note your use of ostomy paste is only as a type of saive on the exposed skin between the edge of the water.

Again . . . DO NOT use a ring if ostomy paste under the water thinking that you are augmenting the wafer’s adhesion as if applying a ring of Elmer’s glue. Use of ostomy paste in this manner is a major source of embarrassing leaks. The ostomy paste erves as a conduit for liquid ileostomy output to migrate through. Ostomy paste is only meant to fill small divots or creases in the skin. And that use is also questionable. Think of ostomy paste as grout that you would use to fill indentations between stoneware used in a countertop. Ostomy paste has no adhesion properties. The misnomer naming of ostomy paste plagues almost every individual to an ostomy.

As you are practicing, using a clipping of an adaptic ring to fill in divots and creases is the far better approach. Adaptic rings act as a barrier to liquid ileostomy output.

I also agree with cutting the water with extra allowance for the stoma. Aromas move and are busy - they contract and prolapse with regular peristalsis movement. Some stomas are more fragile in their surface vascularization, which can lead to bleeding is the wafer is cut too close.

I also recommend the Coloplast Mio line of wafers and pouches. The wafers are composed of a unique elastic matrix. The result is a thin and highly pliable wafer that moves as the body moves. Rigid wafers (and often convex wafers with the added hard plastic bowel that protrudes a retracted stoma) often cause more leaks due to their inherent rigidity. Moving to a highly pliable and low profile wafer that adheres intimately to the skin is often a solution to the problem of water leaks.

Finding the optimal ostomy pouching system takes time and experimenting with different products and brands. There are hundreds of different ostomy products. Even for those of you with a temporary ostomy, take some time to meet with an ostomy nurse or visit the ostomy UOAA forum to help individualize your ostomy set-up. What you were sent home with from the hospital represents only what the hospital has in stock and what the hospital contracts with to have on hand.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Sat Nov 04, 2017 11:24 pm

I think they call it paste because of its consistency, not its purpose. I use toothpaste, but never once thought I was gluing my teeth. I think of it as caulk. It's sticky as hell to get on and works well to seal gaps, but it is not meant to attach things together.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy woes

Postby heiders33 » Sun Nov 05, 2017 5:13 pm

That is not how I was taught to apply my wafer. I was taught to cut the hole as close to the size of the stoma as possible, and to place the ring on the back of the wafer the same size as the hole I cut. I will definitely try your method of cutting it larger, and using the ring as my first line defense by shaping it around the stoma. It seems like that makes so much more sense! I will also stop using the paste, and look into different brands.

Thank you so much everyone for your advice! Like i said, while I valued my stoma nurses' help, I feel they didn't always give me the most helpful advice. It's so helpful to get advice from people who actually have ileostomies.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

Aqx99
Posts: 245
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Sun Nov 05, 2017 8:53 pm

heiders33 wrote:That is not how I was taught to apply my wafer. I was taught to cut the hole as close to the size of the stoma as possible, and to place the ring on the back of the wafer the same size as the hole I cut. I will definitely try your method of cutting it larger, and using the ring as my first line defense by shaping it around the stoma. It seems like that makes so much more sense! I will also stop using the paste, and look into different brands.

Thank you so much everyone for your advice! Like i said, while I valued my stoma nurses' help, I feel they didn't always give me the most helpful advice. It's so helpful to get advice from people who actually have ileostomies.


I don't shape the ring around my stoma, I place it on the back of the wafer in pieces where I need the extra help. I use paste to protect the skin that is exposed with the larger hole. You can use paste, just remember that it is not adhesive. Don't let it get under the wafer. I've gotten really good at putting just the right size circle of paste around my stoma so that it does not get under my wafer. I use a damp paper towel to manipulate it, which also leaves enough water residue for me to manipulate it after my pouch is on so that I can be sure I have paste right to the edge of the wafer.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

rockhound
Posts: 34
Joined: Fri Jul 14, 2017 5:00 pm

Re: Ileostomy woes

Postby rockhound » Sun Nov 05, 2017 10:47 pm

Hope this info is useful:

I cut my hole as close to size (maybe ~0.5-1 mm gap), but also placed a piece of a coloplast brava moldable ring (cut ring into three equal segments and used one each change) on the back of the wafer to provide more of a barrier- my ileostomy opening was basically at a 3'oclock position directly to the right (my right looking down) of my belly button. It was also in a crease which developed after I started gaining weight back after surgery. Between the crease and the fact that the opening was ~1.5" from the belly button, I had a nice pathway for leaky fluids. So the partial ring helped shore things up; I would place it in between the belly button and around stoma opening, after tapering down the ring ends like someone mentioned earlier. I also used a convex wafer system (Coloplast Sen Sura Mio) as well as a belt. All of that helped I guess, though I really had to change every other day due to leaks and runny output (esp. during chemo). My main problem that really helped cause the leaks was the side of the wafer over the belly button was barely attached due to how close the stoma was to belly button. So that whole side (left) of wafer would start to pull off after a day, esp. if I slept on my right side. I finally moved to a system where I stuck a wad of tissue paper right in my belly button (to add some mass and shore things up there), then stuck the wafer on, and finally covered the left side of the wafer and my belly button with a half of an elastic barrier strip. That strip was like tape and provided extra adhesion and support to really hold that side down and I finally was able to push things to 2-3 days but I still had lots of irritation (really every other day worked best for me). Of course I did not latch onto that system until about 2 weeks before my reversal surgery :D

Anyway, like others have stated, it will take some experimentation. I live two hours from the hospital where I had surgery, but luckily found a local ostomy nurse. Those meetings with her were super helpful. I also spent a bunch of time trying on sample bags from all the ostomy suppliers; the coloplast worked best for me (had hollister originally). I was able to get changing down fairly quick eventually, but it was still a process- I would usually always change after showering in the morning and after eating a marshmellow or two (before actual breakfast). Even doing that, I'd get the "garden hose" effect occasionally (a cup in pants was not going to catch that fountain, but I like that concept!) and probably every other change was a little bit of a mess. No spouting while changing was something to celebrate! I only had minor stoma bleeding so can't really speak to that. The Cavlion wipes that were mentioned earlier were great also and I used that after a barrier powder over the messed up skin around the stoma. Maybe 2-3 times of powder-wipe-dry, powder-wipe-dry, etc. before sticking on the wafer with the partial ring.

All-in-all I only had one true leak that got a little messy in public and ultimately I learned I could deal with the ileostomy forever if I needed to. Also, do watch what you eat - I had a partial blockage in week 2 after getting the ileostomy and it sucked. Good luck!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI-H
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT

SweetC80
Posts: 62
Joined: Fri Sep 01, 2017 1:28 pm

Re: Ileostomy woes

Postby SweetC80 » Mon Nov 06, 2017 10:14 am

Lee wrote:Hi and welcome.

I have a permanent colostomy, butt am aware that the ileostomy can be problems at time. I'm going to recommend checking out this other site.

The United Ostomy Association. They have some very knowledgeable people who can probably better answer your questions.

http://www.ostomy.org/Home.html

Good luck,

Lee

Thanks for posting this. My mother has been having a heck of a time with her ileostomy. It' keeps leaking and falling off. She didn't have issues for the first couple months, but all of a sudden it just is giving her problems.
My Mom's history
68 years old at diagnoses
12/16 Stage IIIb Rectal Cancer CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon (9 non resectable pre cancerous polyps), Rectum and Anus removal Perm Ileostomy Bag
7/17 Starts FOLFOX
9/17 Stage IV 9cm Liver Met plus abdominal Lymph Nods and suspicious Lung Nodule CEA 197
9/17 Starts Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 CEA 425 waiting on scan

heiders33
Posts: 20
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy woes

Postby heiders33 » Thu Nov 09, 2017 9:16 am

I changed my bag today and noticed that the major irritation was gone. There was still redness around the stoma, but no broken skin. I did notice a tiny "welt" on the top right side above the stoma that didn't have any sensitivity, so it almost seemed like it was part of the stoma, not an irritation. Has anyone else experienced this? It was weird but for some reason didn't worry me.

I didn't eat past 6:00 last night, and it was SO much easier to change the bag this time! There was only minimal bleeding, which means that clearly my constant cleaning the last time was causing the bleeding. I tried the method of molding the ring around the stoma first and then placing on the wafer. I did use a little paste to fill in divets, but made sure none of it got under the ring. We will see how this goes.

Also, it's clear that the convex appliance work much better for my skin. I tried a Coloplast bag once but the sticker didn't adhere to my skin well at all. Hollister has actually done a much better job with the sticker adhering to my skin. I am going to look into different types of barrier rings just to try them out.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX


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